Cytarabine, also known as cytosine arabinoside (ara-C), is a chemotherapy drug used to treat various types of cancer. It works by interfering with DNA synthesis, making it especially effective against rapidly dividing cancer cells. Originally derived from a Caribbean sea sponge, cytarabine was developed after researchers discovered that certain nucleotides in the sponge could disrupt DNA replication. The drug is typically administered by injection into a vein, under the skin, or directly into the cerebrospinal fluid. Common side effects include bone marrow suppression, nausea, vomiting, diarrhea, liver issues, mouth ulcers, and increased risk of bleeding. More serious side effects can include lung disease, allergic reactions, and neurological symptoms such as loss of consciousness.
Thursday - March 20, 2025
Our appointment at Primary Children's was at 8am. I didn't know what all of it would entail, so I made sure our schedules were clear. Previously our hospital visits had been around 4-6 hours so we planned on that. Luckily, it was a lot shorter than what we were expecting. We walked into oncology and they checked us in. They weighed her and got her height. I saw that she had lost weight and I remember being worried about how chemo was going to affect her weight. They put us in an oncology room. While we were waiting, Isla was being playful with Jordan and very sweet.
Multiple people came in to talk to us. One of the first was a dietician. She told us what to expect while Isla was doing chemotherapy. One of the side effects from cytarabine is nausea. The dietician told us that when Isla is nauseous, she most likely will not eat. They are going to keep a close eye on her weight because if she loses too much, then they will need to intervene. She told us to add fats where we can. For example, adding extra butter or letting her eat caloric dense foods. She is already measuring on the smaller side, so she doesn't have weight to lose.
The next person that came in was the oncology social worker. She asked about how we were coping with everything, emotionally and financially. It was nice to talk to someone who had resources that could help out. Because LCH is considered "cancer-like" and not "cancer", Isla doesn't qualify for a lot of the same things cancer patients do. She does, however, qualify for everything that is for those who go through chemotherapy. We are in a weird gray area. Although, I am incredibly thankful for all the possible resources we do have access to.
Next was the pediatric oncologist to answer any questions we had. I can't remember what we asked, but she was very thorough in her responses. Once we were done speaking to the doctor, two nurses came in to give Isla her first chemo shot. Normally Isla would get her blood drawn before she gets the first shot in the round, but she already had her blood drawn on Tuesday at the PET scan. One nurse tried to distract Isla with lights and toys, while the other gave Isla her cytarabine shot.
She cried a little, but was smiling once she realized that it was over. Our strong little Isla! There wasn't much side effect wise first day, except she slept around 3-4 hours for her nap and she was running a little warm. But besides that, everything else was fine! While Isla receives chemo, we have to give her nausea medication every 6-8 hours for those five days of shots. That way there is less of a chance of her getting nauseated or throwing up. Also, during the whole year of treatment, Isla has to take an antibiotic twice a week to prevent her getting pneumonia from cytarabine. They also prescribed Isla a numbing cream to put on before she gets her shots to help with the pain.
Later that night, the hospital delivered the rest of the cytarabine shots to our house and other supplies for the home health nurses.
Friday - March 21, 2025
Isla's first home health shot. We put the numbing cream on Isla's other thigh about a half hour before she was going to get the shot. My mom was over helping with the boys when the home health nurse showed up. My mom works at the hospital and knew the nurse, so that was a little comforting. She was very kind and Isla was calm through the whole thing. She barely even made a face. I think the numbing cream really helped. 
We stayed on top of the nausea medication the rest of the day and she seemed fine. She was playing and even starting to walk a little more than normal. It was a relief. She had a hard time napping though, and that night she really struggled with sleep.
Saturday - March 22, 2025
We hadn't heard from the home health nurse on what time they were going to come over, so we decided to go to the butterfly biosphere Saturday morning. I brought her numbing cream with us just in case. She was walking with Jordan, looking at everything there was to look at. There were times when she fell or asked to be held, but overall better than how she had been previously.
A different home health nurse called me to ask if they could come over. I told him we would be home soon and so we left. Before we started driving, I put numbing cream on the back of Isla's left arm. We got home and about 5-10 mins later, the home health nurse showed up. Everything went great. She didn't really cry and the shot was pretty quick. She did look grumpy though because she really wanted to look at the book she was holding.
Our boys watched this time. I still don't think they know 100% of what is going on. We all cheered when the shot was done and Isla smiled from ear to ear. Shot #3 done.
Sunday - March 23, 2025
Isla loves being outside, so we try to go on walks when we can. We hadn't heard from the home health nurse, but we figured we had time for a family walk. The boys rode their bikes and we pushed Isla in the stroller. There was one point where Isla wanted to walk and hold my hand. She was walking pretty good, but still limping.
When we walked up to the house, the home health nurse was at our front door. They had only been waiting about a minute or so. I remember being upset that they didn't give us a heads up so I could give Isla the numbing cream. This shot was probably the worst one out of all of them.
Later that day, I took her on another walk. It was sunny outside and I thought that the sun would be good for her. When we got home, I put her on the ground inside and she fell on the ground and threw up. It wasn't a ton of throw up, but I felt so bad. About 30 minutes later, her face got super swollen and I thought that maybe she was having an allergic reaction to something. I tried calling the nurse, but they don't work on Sunday. Jordan and I kept an eye on it and prayed that it wasn't something more serious.
Monday - March 24, 2025
When Isla woke up, her face was almost completely back to normal. Not red and swollen. She seemed completely fine. The nurse called me back and said that it was probably a reaction from being in the sun. During chemo, her skin will be super sensitive to sunlight.
We gave her the antibiotic and waited for the home health nurse. She let us know when she would get to the house so we got the numbing cream on her left thigh before she go there. Isla was not excited because of the day before, but once she realized that the shot didn't hurt, she started giggling. We all cheered when the shot was done.
Isla got really nauseated that day. She threw up around 20 times within a couple of hours. She refused to eat and eventually it was time for her next dose of the nausea medication. She stopped throwing up after that. It was really sad. There was one point where she was so tired from throwing up, that she couldn't hold her head up anymore. That was probably the lowest point of the whole five days. Besides that and the bad time sleeping, she has done really well. She is walking more and still her cute happy self. So glad round #1 is done!
She gets her blood drawn at our house on April 7, and then her second session of chemo starts April 21. I'm finally caught up! Thank you for being here for Isla's journey.
Love, Megan
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